What I Am Thankful for (and What I am Decidedly Not)

My 70-year-old dad, Jack, is a kind, generous, loyal man whose trust in a doctor, a nurse, and a broken health care system nearly cost him his life (a few times). For 26 years, my dad was misdiagnosed with asthma by his primary care physician. He was prescribed every inhaler known and was at times prescribed more than one. My dad spent a fortune on these inhalers, but found little relief.

It was only after the 100th or so trip to his PCP to complain of asthma that the doctor suggested that a specialist take a look at his heart. The cardiologist subsequently ordered an angiogram.

I went down to Virginia and my folks and I laughed and joked during the educational video regarding angiograms, hoping that my dad’s outpatient procedure would not hold up our lunch plans. Hours later when the cardiologist greeted my mother and me with “I’m very sorry,” and proceeded to tell us about my dad’s severe heart disease, we were stunned. Clearly, the cardiologist was talking about the wrong person.

He wasn’t. And then he told us that my dad, at age 68, was “too old” for a heart transplant. My life, my whole family’s life, changed dramatically in those 5 minutes.

I read about cardiac asthma, and the more I learned, the less I could believe that a primary care physician could have missed it. The man my dad trusted with his health for 26 years had betrayed us.

If diagnosed earlier, the treatment would have been much less invasive and risky. My father now needed a triple bypass on a very compromised heart. First, we had to get clearance from the thoracic surgeon because over the years, my dad’s heart had been naturally creating its own bypasses to the extent that it was unclear if there was even room for the surgeons to find an unoccupied space to graft the bypass. How could a primary care physician let this happen?

My dad is stoic and forgiving, and he weathered his triple bypass much better than anyone expected. When he was released two weeks later, we thought we were out of the woods. Of course, my parents had to make changes in lifestyle and diet. My mom is a super caregiver and she was on top of all the new ways of doing business.

What we didn’t anticipate is that a medication error and sheer ignorance on the part of a visiting nurse would once again almost cost my dad his life. I know transitions from the hospital to home are fraught with problems. I also know that if it weren’t for my mother diligently monitoring my dad’s weight, noticing the swelling in his ankles, ignoring the advice of the visiting nurse who said to “just to give it a few days,” and then ultimately calling the ambulance at 2 am to take my dad back to the hospital, he might not be with us today. They (the doctor, the nurse, the entire health care team at the hospital) forgot to prescribe a diuretic on the discharge orders.

Giving Thanks

Despite the anger that still consumes me two years later, I think in some strange way we benefited from these recurring episodes of poor care. Now that we have lost all faith in the health care system, my mother trusts her own instincts and my dad has learned to ignore his default “grin and bear it attitude.” He now admits when something does not feel right. And for this, regrettably, I am thankful.

I am also thankful that I work for a foundation whose specific focus is on health and aging. One reason that I share my father’s story here is to personally underscore the importance of the vital work of our Hartford grantees. My dad’s experience could have been different in so many ways:

Had his primary care doctor been exposed to any sort of education or training specific to older adults, the misdiagnosis may not have occurred. The Hartford Foundation supports geriatric competency work in medicine, nursing, and social work so all students are exposed to the basic skills they need to care for our aging society.

If hospital staff had paid greater care and attention to my dad’s first discharge, he could have avoided rehospitalization. This validates the need for care transition efforts such as those championed by Dr. Eric Coleman and Dr. Mary Naylor to ensure that services are coordinated as older patients return home from the hospital.

Medication errors are absolutely avoidable. Forgetting to prescribe my dad’s essential diuretic is inexcusable. A potential solution is Partners in Care’s Hartford-funded Medication Management Improvement System, an evidence-based intervention to enable health care professionals to identify and resolve medicine problems common for older adults living in the community.

Competent, compassionate care in the home should be the norm and not the exception. No one should ever be told to ignore a life-threatening symptom. For this, the Hartford Foundation is proud to support the Visiting Nurse Service of New York’s Geriatric Home Care Excellence program to improve the health of older adults receiving care in the home.

At the Hartford Foundation, we give thanks for all our grantees who are out there making the health care experience for older adults more effective, efficient, safe and patient centered.

6 thoughts on “What I Am Thankful for (and What I am Decidedly Not)”

Unfortunately, Doctors do not take the time or resources to treat the whole body. They are rushed and not prepared. I have no patience with incompetence in the health care profession. It costs lives and they make the big bucks. Thank God, your mother is so proactive. Isaac was given amoxicillin ( I was not there) while telling the doctor and his Dad he was allergic to it. I had stopped him taking it years earlier. He broke out in hives all over. We were lucky. I have been told my throat hurt due to nerves, and I had a tumor. It is so ridiculous. No one knows your body like you. Older people and children must have an advocate. You know that better than anyone. I suppose all of us must be persistant and vocal about our health.

And I am thankful for colleagues at the Foundation who really care about improving the health and health care of older Americans. I am grateful to Rachael, Cory, and all the staff who have shared their stories this year in the hopes that sharing will help create momentum for change.

Rachael’s post also brings up some especially noteworthy points. First, while we are not anti-professional (doctor, nurse, or social worker), we ARE anti-status quo. When we talk about the need for all professionals to be competent in the care of older people we DO mean the implication that most are currently incompetent to care for them. This is a hard thing to say as we risk alienating our friends and the people we most need to change, but it is the truth.

Second, Rachael’s Dad has a lot of company in the scary, harmful, and expensive course of his treatment. The recent New England Journal of Medicine paper by Jencks, Williams, and Coleman shows 20% of Medicare beneficiaries are re-hospitalized within 30 days. I figure maybe a quarter of those trips back are planned for things like further surgery and another quarter are irreducible with current knowledge when caring for a very sick population. That leaves 10% of beneficiaries who are re-hospitalized because someone wasn’t adequately prepared to do the job or the way the work is organized is so compromised as to predictably produce dangerous outcome. Is there another industry that can survive turning out 1 lemon in every 10 transactions?

Intersting story and I’m sorry for your experiences. However, I am a primary care provider who’s constantly amazed at the number of missed diagnoses I encounter. Now I happen to have a philosophy where I don’t put limits on my patients visit with me. If it takes 10 minutes, they get 10 minutes, but sometimes it takes an hour. Our medical establishment, however, wants to see “numbers.” We’re encouraged to see as many patients as possible and are being forced into a medical record system that promotes a similar view. I can only recommend finding someone who’s not so interested in the numbers and who has the time to really listen.